Epiphany Du Jour – Training To Be An Effective Patient That Begins Post-Diagnosis Begins Too Late1
Question #1: What is the likelihood that an individual reaching adulthood in the US will eventually find himself or herself in the role of a patient? Answer #1: Almost certain, according to my calculations.2
Question #2: When and how does one typically learn to how to operate effectively in the patient role?
Answer #2: While learning to operate in the patient role theoretically takes place whenever one visits a clinician for any reason, that process, which could charitably be called “learning by doing,” is a hit or miss affair that routinely receives little attention until one is concerned about the possibility of or diagnosed with an anxiety-provoking disorder.3
Question #3: What is the worst possible way and the worst possible time to learn to operate effectively in the patient role? Answer #3: See Answer #2.
A Illustrative Scenario
Consider this example: An asymptomatic, intelligent 34 year old woman with only minor interactions previously with organized medicine is diagnosed with breast cancer during a routine exam. Her doctor informs her (accurately) that any delay in treatment increases her risk. She is immediately faced with the decision of whether or not to follow the primary recommendation for surgical intervention and, if she agrees, which of the 2-4 possible procedures she wishes. If she declines the surgical procedures, she must decide which, if any, of the alternative treatments she will undergo. She also has to deal with the impact the diagnosis and treatment will have on her spouse, her children, her job, her friends, and her extended family.
This is, I submit, a suboptimal situation for learning to be an effective patient, the intensity of ones motivation notwithstanding.
The Solution – Teaching How To Be An Effective Patient In The K-12 Curriculum
An explicit goal of elementary, middle, and high schools is preparing children to undertake adult tasks. Thus, in addition to learning basic math, writing methodology, and reading comprehension, students also take courses in sex education, nutrition, consumer skills, and managing relationships.
Learning the skills necessary to be an effective patient, such as what to expect from, how to communicate with, and when to seek help from healthcare professionals, how to understand medical reports, pharmaceutical ads, and other pertinent printed and online literature, … , is at least as important as learning about the risks of unprotected sex or the need to save a portion of ones paycheck against future needs.
Making “How To Be An Effective Patient” part of the K-12 school Health curriculum is no panacea, but it seems a rational and promising alternative that is likely to substantially improve the current “just too late” methodology.4
Credit Due Department: The photo portrait atop this post was taken by Bhernandez. The schoolroom photo was taken by Rob Shenk
Author’s Note: Patient Effectiveness Training is part and parcel of the system I (ambiguously) envision as a replacement for the current, non-functioning patient compliance model. The focus of this piece, that such training should take be part of the public education curriculum, is, admittedly, a tangent, and I am willing to stipulate that I am devoting a post to the notion less because of its impact on treatment adherence rates (although that impact could be significant) than because I think it’s a clever, useful idea. … and, it’s my blog.↩
Almost all of us who make it to adulthood in the US (or Canada or Britain or Germany or Scandinavia, …) will sooner or later be a patient. The exceptions are at most a tiny fraction of the population: those who consciously and conscientiously avoid doctors because of reasoned principles, irrational fears, religious beliefs, cultural mores, or psychological disorders and also manage to avoid membership in organizations such as the armed forces that insist on involvement by clinicians and remain healthy enough that they are not forced into healthcare (e.g., taken in an unconscious state secondary to a cardiovascular accident into an emergency department) until they die.↩
In addition, there are educational processes that are even more sporadic and variable in quality: individuals may, for example, read articles about “how to be a good patient,” attend a workshop at the local hospital about “how to communicate with your doctor,” or receive information through various ad campaigns recommending that viewers ask their doctor about using one or another medication.↩
This is one of those ideas that seems so obvious that one assumes it is being done already. And maybe it is, but I can’t find any discussion of it.↩
We conducted structured interviews of 140 adult English-speaking patients or their primary caregivers after ED discharge in 2 health systems. Participants rated their subjective understanding of 4 domains: (1) diagnosis and cause; (2) ED care; (3) post-ED care, and (4) return instructions. We assessed patient comprehension as the degree of agreement (concordance) between patients’ recall of each of these domains and information obtained from chart review. Two authors scored each case independently and discussed discrepancies before providing a final concordance rating (no concordance, minimal concordance, partial concordance, near concordance, complete concordance).
Seventy-eight percent of patients demonstrated deficient comprehension (less than complete concordance) in at least 1 domain; 51% of patients, in 2 or more domains. Greater than a third of these deficiencies (34%) involved patients’ understanding of post-ED care, whereas only 15% were for diagnosis and cause. The majority of patients with comprehension deficits failed to perceive them. Patients perceived difficulty with comprehension only 20% of the time when they demonstrated deficient comprehension.
Many patients do not understand their ED care or their discharge instructions. Moreover, most patients appear to be unaware of their lack of understanding and report inappropriate confidence in their comprehension and recall.
The Times article elaborates:
Dr. Paul M. Schyve, senior vice president of the Joint Commission, the main organization that accredits hospitals, said: “This study showed that this is much more common than you think. It’s not the rare patient.”
Similar results have been found for patients leaving hospitals, not just emergency rooms. And experts say they help explain why about 18 percent of Medicare patients discharged from a hospital are readmitted within 30 days.
The problem is particularly acute when it comes to drugs. A patient-education program used in 130 health delivery systems across the country found that about 40 percent of patients 65 or older have a medication error after they leave the hospital. A 2006 report by the Institute of Medicine found that doctors and nurses were contributing to these errors by not providing information in an effective way.
78% Of ER Patients Misunderstand Or Lack Discharge Instructions
Based purely on subjective recall of my own limited experience working in Emergency Departments and my treatment of patients who had been referred by Emergency Rooms, I would have guessed at least 60-70% of these clients would demonstrate serious misunderstandings of their discharge instructions. I suspect other clinicians would report similar speculations with some variance based on the presence or absence of a patient population whose native language is different than that used by local clinicians.
Consequently, the finding that 78% of patients in the study left the ER with at least one significant misunderstanding re their discharge instructions falls into that category, familiar to ongoing readers of these posts, of Old News, relegating the chief value of the study to confirmation rather than revelation, the enthusiasm of the New York Times notwithstanding.
On the other hand, this article does raise an important question pertinent to patient compliance:
Is The Problem Noncompliance Or Health Illiteracy Or Both?
And Why Should Anyone Care?
Dr. Eric Coleman, Director of the Care Transitions Program at the University of Colorado (not involved in the study), contributes this observation to the Times article:
In the past, patients who did not follow discharge instructions were often labeled noncompliant. “Now, it’s being called health illiteracy,”1
In fact, the classic definition of medication noncompliance by Sackett and Haynes is “failure or refusal to comply with treatment recommendations.”2 Extrapolating from medication noncompliance to patient noncompliance in general, it would seem that failure to follow ER discharge instructions, whatever the reason, qualifies as noncompliance.
And that is exactly the problem
with the concept of patient noncompliance.
The following may well be a recycled rant for return readers – steel yourselves.
The concept of patient compliance, as used today is not clinically relevant as a management tool because the multitude of factors that have an impact on adherence transcends complexity, commingling disparate categories, primary causes and collateral effects, and generally making a hash of it.
At best, noncompliance is a statistical phenomenon, a nonspecific symptom. If a patient’s body temperature exceeds a given point, that patient has a fever. If another patient demonstrates less behavioral inhibition than a certain percentile of the population, that patient is clinically impulsive. A patient does not take a specified amount (often a seemingly arbitrary percentage) of the total medications prescribed; that patient is noncompliant. Now, symptoms are obviously useful in some ways. They may warn the physician, for example, of an impending catastrophe. Patients spiking a fever of 108, patients so impulsive that they attack bystanders for trivial slights, and patients who take far too many or far too few pills are potential disasters. Bu the fundamental benefit of symptoms is their role in the service of diagnosis and determining etiology of health problems. In this aspect, noncompliance is a no-show. The difference between fever and impulsiveness on one hand and noncompliance on the other as symptoms is that few clinicians would be content to end a workup of a patient once “fever” or “impulsiveness” are identified.
At worst, noncompliance is a truism: patients are noncompliant because they don’t adhere to treatment recommendations; those patients don’t adhere to treatment recommendations because they are noncompliant.
The real clinker, of course, is that exploring a clinically irrelevant concept by pursuing ever more well-designed, ever larger studies and expending more intellectual effort developing models of that concept’s operations will result – if all goes well – in more elaborate and precise explanations that are also clinically irrelevant.
Who knows? Maybe that is part of the reason there have been no significant strides forward in the field of compliance in the past 100 years despite the thousands of articles, books, and reports dedicated to the theme.
Oversimplification in the service of stukffing material into the column inches allotted it has resulted, I believe, in a false dichotomy, i.e., that patients suffer from either noncompliance or health illiteracy. Aside from health illiteracy being commonly considered a cause of noncompliance, I would wager that even if all of these patients had been educated to the point of expertise, a large percentage would nonetheless succumb to one or another of the other 42,823 varieties of noncompliance.↩
Haynes RB, Taylor DW, Sackett DL: Compliance in health care. Baltimore: Johns Hopkins University Press; 1979↩
I hadn’t planned to post today, but after I came across Bring Friend To The Hospital, a 9 Sept 2008 Chicago Tribune article by Susan Kutchin Pallant, I found it so resonant with my own experience that I felt compelled to point others to it. In addition, the linkage to patient compliance is apparent.
The following excerpts indicate the focus of the piece, but the entire article is worth reading:
A study exploring the efficacy of companions and the elderly in medical settings, published this summer in the Archives of Internal Medicine, found that companions are actively engaged in the care process and add to patients’ satisfaction with their care. A growing number of companies offer professional patient advocacy services that are designed to assist patients with everything from deciphering a bill to ensuring that a patient is properly taking a prescribed medication.
The elderly aren’t the only ones who might benefit from a partner in health care. Whether a patient hires a professional advocate or relies on a relative or friend to help navigate our complex medical arena, the evidence that supports having a partner is building.
Patients can get anxious, making it difficult to understand and remember medical details. In one study, Roy C. Kessels, professor of neuropsychology and rehabilitation psychology at Radboud University in the Netherlands, found that patients immediately forget 40 percent to 80 percent of medical information provided by health-care practitioners.”Close relatives aren’t always the optimal choice, but support of any kind can be valuable,” said Wilkos-Prostran.
… A study published this year in the Journal of the American College of Surgeons showed that patients with a large support network of family and friends report feeling less pain and anxiety before surgery. Wilkos-Prostran added, “Hospitalized patients who have visitors also recover much faster than those who are left alone.”